Spouses' experiences of living with a partner with Alzheimer's disease

• The overall aim of the study was to gain some understanding of the lived experience of the care-giving spouses regarding their experiences of the manifestations of the disease, perception of their own health, the possibility of influencing the interpretation of the past, the present and future, outlook on life, surrounding contacts and intimate relationships with their sick partners. The spouses (n=13) of Alzheimer victims were followed with the help of personal interviews, diaries and telephone interviews during a two-years period. The texts was analysed according to a phenomenological-hermeneutic method. The main findings in the study showed that the spouses own health remained quite stable over time. Their perception of the development of their own health seemed to be influenced by how they saw their power to influence their situation, which seemed to be determined by how they interpreted the cause of their health problems.The social network was another important factor for understanding the spouses' experiences. The findings imply that spouses' images of themselves in relation to others were important for their perception of the overall social network. The spouses mostly regarded their relationships positively and their social networks were described as quite stable over time. The spouse's marital relationships, in most cases, seemed to undergo changes with the progress of the disease. Some spouses could maintain feelings of love but mostly the relationships were transformed into ones of tenderness, pity and estrangement. The spouses' valuation of their demented partner was mostly in the form of one of two divergent perspectives. On the one hand, spouses who seemed to perceive their partner as a person separate from the disease, could function as complementary ego aids. On the other hand some spouses were unable to make a distinction between the spouse as a person and the disease.The spouses' experiences regarding their previous relationship with parents, value system, philosophy of life, competence and autonomy seemed to be critical in their experiences of their caring situation. It appears that there is a sub-group of vulnerable carers, as suggested by the concurrence of psychological, physical, and social morbidity, along with deterioration in their marital relationship.The findings are discussed in relation to searching for meaning, the importance of significant others, perceiving and valuing the other, and caring relationships within a life-span perspective.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Geriatrik (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Geriatrics (hsv//eng)

Keyword

Home-care

dementia care

perception of health

social networks

marital relationship

valuation of the other

life-span development

Publication and Content Type

vet (subject category)

dok (subject category)